Silver Linings: Palliative care helps NH elders navigate difficult diagnoses
Editor's note: This is the first of two articles looking at how palliative care is changing medical care for New Hampshire's seniors. Tomorrow, the series provides a behind-the-scenes look at how it works.
Elsa Abele was putting her summer garden to bed last fall and felt a pain in her shoulder blade. It lingered a few days and her husband suggested seeing a doctor.
The symptoms quickly set off a series of tests to rule out a heart issue, and they did. It wasn't her heart. It was non-small cell lung cancer. And it's incurable.
For the vibrant 78-year-old who already had beat breast cancer, the diagnosis began what she refers to as "the next half" of her life. It will be a journey through a clinical trial that includes immunotherapy and chemotherapy and offers no guarantees for the future. She has sought the help of a team of palliative care providers to ensure there is a focus on her care, not just her cancer.
"(Palliative care) helps you through the journey in a positive sense," Abele said. "It's not about winding down."
This type of care is a multi-level approach to help patients and their families navigate a life-changing diagnosis. The treatment team can include doctors, nurses, social workers, spiritual counselors, creative arts coaches and others who can help treat the person, not just the body.
It's one of the fastest-growing trends in health care and it's taking hold in the rapidly aging state of New Hampshire, with many hospitals, visiting nurses, and private practices now offering palliative care. Dartmouth-Hitchcock Medical Center in Lebanon will open the $22 million Jack Byrne Center for Palliative and Hospice Care Center later this year to promote research and innovation in the field, while also providing care.
"It's long-term, whole-person support," said Janice McDermott, head of the New Hampshire Hospice and Palliative Care Association. "It's really individualized care for people who will be living with some sort of long-term treatment."
As the state's population continues to grow older, McDermott said, "we're going to see increasing needs" in elder health care.
According to the National Council on Aging, approximately 92 percent of all older adults have at least one chronic disease and 77 percent have at least two. These conditions include heart disease, cancer, stroke, diabetes, COPD, and dementia.
When such a diagnosis comes, so does the palliative care team. It helps patients decide whether they want curative or comfort care. It takes care of both the patient's emotional and physical state. It serves as a resource for the patients and families to help them make difficult decisions. McDermott calls it "a bridge to quality of life."
"It's a gift to have that other side of your life acknowledged and cared for while you are going through this," Abele said.
Living not dying
Palliative care isn't hospice, but hospice is a form of palliative care. Hospice comes when a doctor determines a patient has less than six months to live. Palliative care helps people prepare to live comfortably with a serious medical condition, not necessarily to die from one.
"There's still a perspective in the public that it's about giving up, planning for your death," said Dr. Kathryn Kirkland, chief of palliative care at Dartmouth-Hitchcock Medical Center in Lebanon. "But it's about what's most important to you and moving into imagining different futures for yourself."
Abele is receiving her palliative care from Capital Regional Palliative Care and Hospice at Concord Hospital. It's a grass-roots program launched three years ago that works with community clinics, visiting nurses, hospice and assisted-living facilities. For Dr. Stephen Rust, the center's executive director, this type of patient care brings him back to the true mission of medicine.
"In a medical system now as bucketed as it is, it's hard to get a 360-degree view of the patient. We're looking at who that person is and you need to know all those perspectives," Rust said.
He said when doctors look at a patient, they may see a 74-year-old woman with metastatic breast cancer. He said the palliative team sees a woman with metastatic breast cancer with three kids and four grandchildren who is a piano teacher and volunteers at the local soup kitchen.
"All those things. We talk about her and not just as a body that has a disease," Rust said. "When we do that, it changes everything. The conversation changes."
The cost of care
One of the foremost studies in palliative care was done at Dana-Farber Cancer Institute in Boston on newly diagnosed lung cancer patients in 2010. Rust said the hope of the study was to show that palliative care patients didn't die earlier than those in hospice. Instead, it found those patients live 2.7 months longer, are happier, and have lower health care costs.
A study in the August edition of the Journal of Palliative Medicine reinforced the idea of cost savings by showing that patients who received palliative care in the last three months of life were hospitalized fewer times, opting for hospice over hospital stays, resulting in approximately $12,000 in savings per patient. A similar study showed that patients who were offered palliative care within 48 hours of a hospital admission had a five-day shorter length of stay and reduced costs by $2,632 per day.
Not all palliative care is covered by insurance, whether it be public or private. Insurance will pay the medical piece, but the work of a chaplain or a social worker or creative arts coach is not covered. Rust said each of those pieces is an important part of the care, but only about one-third of their costs are covered. The rest is paid through philanthropy.
Rust also said doctors are bringing in the palliative care team too late in the process to realize great savings. He estimates that 80 percent of their patients are ready for hospice. End-of-life treatments are not just expensive; they can compromise one's quality of life, Rust said.
He points to someone in the hospital who is said to need dialysis three times a week. That patient has a farm, doesn't want to leave his animals, and can't always find a ride to make the 60-mile one-way trip for treatment. Rust said, "maybe dialysis isn't the answer for him."
"What makes perfect sense medically might not work for them," he said. "And there all kinds of reasons for people to make decisions like that."
The family dynamic
A large piece of palliative care involves a patient's family. Kirkland said the system works best when "palliative care is there to get involved in the decision-making dynamics." Having conversations about life-altering treatments and end-of-life care may be difficult for families, but the specialists say it will help the patient avoid unnecessary treatments and have a better quality of life.
"Palliative care makes a big difference when patients see the true of cost of end-of-life measures, not in dollar signs, but in quality of life," said Dr. Maxwell Vergo, a palliative care specialist at Dartmouth-Hitchcock.
As an example, Rust said the impact of deciding whether a patient wants a feeding tube - a PIC line inserted in the stomach to provide liquid nutrition when a patient has difficulties or can no longer eat. A feeding tube takes away a patient's ability to eat any real food, and the liquid nutrition is "not very satisfying," Rust said.
It's those types of treatments that are talked about in the palliative process and decisions are best made before a crisis, Rust said.
"Some people have moral issues with not feeding someone," he said. "It doesn't show any benefits, any survival benefits, and decreases the quality of life."
According to the Journal of the American Medical Association, 90 percent of people polled said they would prefer to die at home, yet data shows that only about one-third of people 65 and older actually do. It also showed that, while 9 out of 10 people felt doctors should be having those types of conversations, only 17 percent actually did.
McDermott said having those conversations can become a barrier to one's wishes and a battle point in families.
"It's not just the forms and sitting with a lawyer, signing a form and tucking it away," she said. "These situations can put families into a place of panic because they don't know what a person wrote in them."
Abele's husband, Reine, 84, has provided spiritual help for those going through hospice in the past. She said it's been much different for him, now that he is going through end-of-life issues with her. His worry caused a nervous facial tic that she said has gone away since meeting with the team.
"He has somewhere to go besides me," she said. "It is a place where your closest support can get answers."
Silver Linings is a continuing Union Leader/Sunday News report focusing on the issues of New Hampshire’s aging population and seeking out solutions. Union Leader reporter Gretchen Grosky would like to hear from readers about issues related to aging. She can be reached at email@example.com or (603) 206-7739. See more at www.unionleader.com/aging.